Who's on Kadcyla/TDM1?
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Hi All,
I just wanted to post a "happy gram" this evening. Today I had my 4th Kadcyla infusion and apparently, I'm rocking this medication! After just 3 infusions, my blood work is now showing amazing results. ALL my marker levels have dropped into "normal" ranges and I've had a "complete clinical response". All I can say, is after 6 1/2 years of this on again/off again battle-it's one crazy roller coaster!! But for right now-all is looking up!!! Hope everyone else is having a good week as well.
Enjoy the coming weekend!
Fran
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Yay Fran! I had one of those a few years ago. Are you going to stay on Kadcyla for awhile or go on Herceptin?
Denise
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Excellent news, Fran. Glad to hear it!
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Atta girl Fran!!!
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just stopping in.... wishing you all a Beautiful weekend. Doing good here. hoping my liver enzyme numbers dont keep climbing. arrrggghhh
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Thanks for everyone's well wishes!
Denny- I'm staying on Kadcyla since it's apparently doing its job and I already "failed out" with the Herceptin by itself. So far, the SE's are quite manageable (not loving all the fatigue but I'm hanging tough!)
Have a great weekend everyone!
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Great news Fran. My numbers have been great. And the tumor markers are going down. This drug seems to be doing a good job. I did take this week off. I hated to but haven't missed a treatment in years. The world cup dressage finals are in Omaha this week and I really wanted to get to it;. First the prices were too high and then they did a special and I could afford a ticket. And of course the treatment was 3 days before the event. I knew it would make it impossible to go so I asked about a delay. I may be wrong but you have to do something sometime you really enjoy. My niece and her children were here and the laughter was so wonderful. It is the best medicine. I hope everyone has a great weekend, I am not sure how wore out I will be but I will enjoy it. And then a treatment Wen. I can take that.
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Hi, I'm new to this forum though have been dealing with HER2+ BC on and off since 2012. After one year of Herceptin, I was initially cleared but then rediagnosed last May with METS to liver, lungs and bones. After 17 rounds of taxol, Herceptin and Perjeta, I went off chemo but stayed on Herceptin and Perjeta to keep the cancer at bay (along with with Lupron and Letrazole, too) though most had disappeared. But then, five months later, it resurfaced. Now I'm taking Kadcyla with Herceptin. The first round was tough, the second easier. Have yet to have my third. My question is, how long will I have to take this? What are your experiences? Thanks in advance for your responses.
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Mouette-----it would help you to read through a lot of these posts since we all have had different results. There are so many factors to be figured in as far as how long you will need Kadcyla.
Are you sure that you are also getting Herceptin? Kadcyla is a super Herceptin and is not given with Herceptin, as far as I know.
Pasque----I am glad that you had a good time. I have had to skip treatments from time to time and don't know if it really made a difference.
Fran----good idea to stay on the Kadcyla. I was off for 9 months and the nodes came back. So I will stay on it forever, unless it really starts to fail.
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Congrats Fran! That's great news for sure. Hopefully you will get a good long run on Kadcyla - after 6.5 years on the roller coaster, you certainly deserve it.
Pasque, I know it is anxiety inducing to miss or postpone treatment but as my MO told me when I was stressing about rescheduling due to a vacation, we go through all of this so that we can live so go out there and live it up and enjoy yourself. I've been assured that there is no magic to the timing of these treatments so just get back on schedule as soon as you can no try not to worry. Easy to say, I know.
Mouette, welcome to Kadcyla. As Denny said, it might be helpful for you to review the past posts on this thread since the side effects can vary. For me, Kadcyla has been very manageable especially after the first few months. Initially I had more aches and pains - numbness/neuropathy in my feet (especially) - but that has subsided significantly of late. My MO said she thought it was likely my nerves "waking up" after getting off of Abraxane which I had been on for about 4-5 months prior. I'm told I'll stay on Kadcyla as long as it's working and the side effects are tolerable. I should note that my heart function, which had declined while on Herceptin/Perjeta has also rebounded into normal range function again. The biggest concern I have is liver function numbers. They are always elevated on this drug but not dangerously so. Hope it's good to you!
M.
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Congratulations Fran: Kadcyla turned it around for me. Had Herception and Perjeta and had progression along with horrible GI SE. Switched to Kadcyla and having great results. Liver tests started acting up, bilirubin was high. At that time had two bone scans under my belt which were stable. MO decided since doing well now was time to rest from chemo hoping my bilirubin would drop. That was December 2016. Bone scan done last week got results, still stable all liver function tests are normal. Holding treatment again. Feel great. Worked in my flower garden today.
Wanda
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Hi, I did go to the world cup of the horse world. It was so special to see the top horses and riders in the world compete. I did much better then I thought. I took crutches so I could rest on them some. Did use some pain pills and had a really good time. Something I won't see again because it will be many years before it is back in the area if ever. Was tired and a bit sore from all the walking but I can handle that. Go for a treatment this Wen. I have to say I do like this drug. Hope it keeps working for a long time. Will be so good to see the sun come out. We have been fairly gloomy for a while. Hope every one is doing good.
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Hi everyone,
Hope everyone is doing well,
Pasque: I hope you did enjoy the time off , you deserved, I am also planning to skip a week maybe in July.
Welcome Mouette:You will have a good support in this group....all the ladies are very knowlagable and kind.
I can talk about my personal experience:
After 5 months and 8 infusions of Katcyla, finally my side effect are lessened, my first inductions were the worst , I still have numbness in my right arm that cames and goes..( this is the side effect of Katcyla) .but after the last infucion I finally feel like my body have finally adjust to the medication....
Hopes it will continue like this for long time....
I also taking Zometa and I getting use to the medication too.....
I sending to all of you a good vibe....
Hoping we will continue in this jorney for along time......
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Fran: I really happy for the news!!!!
Keep it up!!
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Good Morning!!!
I have a question, if anybody can help, I will really appreciate.
I have bone metastasis, last summer I got progression in my scapula, and then I change medication to Katcyla, anyway after I taking Katcyla, all my pains has gone but I start having a litle pains , like someone is pulling my hair but very mild pain, like in two specific sites in my head, is like medication working feeling ?? I really can not discribe the pain, is mild...and the pain is in the scalp...
I ask my doctor if he could check my head, but he didn't do it ...
Should I been concern? Or insist on to check my head???
Thanks in advance .
Have a great day!!!
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Escorpion: Any chance that this is neuropathy, which is one of my worst SE's on Kadcyla, which is in itself a wonder drug.
I've been on it every three weeks since January 2016, so almost 15 months! Just had a CT Scan and bone scan and they both came up showing good results again. I hope I can live on this for the next however many years. It works.
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Thanks Miriam Willi, I feel much better now, wishing everyone a good weekend.
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Hi ladies! just my typical weekend check in. all is well. kadcyla tues this week. sounds like everyone is doing well!
Have a Beautiful weekend~
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Thanks for the response, Denny. Much appreciated.
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Thanks for the welcome. Much appreciated and glad to be on this thread.
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Hi Denny, others,
I'm finally going to get the dental work for the crown that fell of this weekend...And going to ask the dentist to put me on antibiotics. Can you help me understand the why is needed so I can relay to her?
My oncologist said I'm fine, no meds needed ?!?
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may I ask you ladies... what or where are your mets that you are now stage 4 and to be on Kadcyla?
I have lung mets. 2 they are approx 8mm and 3 mm. 2 CT'scans/1 PET scan different radiologists and 2 different measurements on the size which the size differs approx 2 mm (my onc said radiolgists can measure different so it can be off a little bit) .. i have not had a biopsy as they are not in a location that can get in too. so ... i am not 100% certain they are cancer. but not sure I want to risk not being on kadcyla and if they are cancer, they grow.
my labs today showed my AST went down teeny bit i mean teeny lol from 51 to 49 which is above normal (14-36) all my other numbers were normal. doc says still thinks from kadcyla. i kept thinking back to a couple of you that had answered my quetion couple months ago about the liver enzyme numbers and couple of you said you had high numbers or that it changed. i also reread today on kadcyla that it can cause liver damage so .. as doc said today... we will keep eye on it. if it triples then we change things around. we have a preplan of sorts. doc did ck my fingernails today... i didnt question him when he did so... just . thought oh okay showed him my nails wasnt til on way home i thought ..what the heck.. so I googled ... our nails can show changes to them if your liver is damaged or diseased. my nails look good well .... dont show signs of liver damage... bu you can see i worked in the yard yesterday and pulled old stems and flower and weeds trying to clean up the flower beds so had couple uneven nails.
Denny123 I know you are a longtime Kadcyla ... how have your numbers for liver enzymes been, if you dont mind that I ask,. if you prefer not to answer I respect and understand that.
Thank you for any replies to this post regarding what/where are your mets. and keep me updated as i will you on the liver enzyme numbers. Hugs~
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gramen-the reason for the antibiotics is because you had reconstruction. Did you have saline or silicone implants? If so, they are a foreign object just like a knee replacement.
If you had a Tram flap or DIEP, you probably don't need antibiotics.
I just had a filling today and my dentist said that I didn't need antibiotics, but I took 300mg of Cleosin anyway. When you have your teeth cleaned, is when the bacteria can enter your blood stream and cause an infection in your implants.
So it depends on what kind of dental work you are having and if you had saline or silicone.
Be sure to take a Probiotic, if you do take them.
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DL3- ask me anything that you want-I have been talking about myself for 15 years. I have 8 nodes in my chest and neck.
My nurses said that my liver enzymes are okay considering the fact that in 2004, my liver was filled with BC mets. So I do have liver damage anyway. But it isn't bad enough to prevent me from getting Kadcyla.
So apparently, the Kadcyla hasn't damaged my liver very much even though my liver already has damage.
I have some black areas on my a couple of my toenails from the Kadcyla, but they aren't bad at all as compared to what Taxotere did.
And the black areas have not gotten worse even though I have been on K for 3 years.
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Ditto on Denny's response, DL3.
I've only been on Kadcyla for about 15 months, and my metastasis was to the liver, but there's an 8 mm speck in my left lung. That was there at the very beginning (6-1/2 years ago, I was Dx'd St.4) and it hasn't changed at all.
My MO's consider that small, especially in relation to the liver Mets.
Those liver enzyme numbers scare you at first, then, after being on this stuff and talking to my MO's a lot, you're talked down somewhat and come to understand that there's a "new normal" when on this drug. The numbers cycle up & down in minimal ebb & flow patterns.
Nothing of significance to report on my nails. There is a lot of improvement since Taxotere, though. And I'm having the fingernails done now with SNS (similar to acrylic but without the fumes) and my nails look pretty good.
Hang in there, DL3. This drug shows great promise and I think you can rest easy on some of these changes.
Love to all.
(Miriam)
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thank you so much Denny! I have silicone implants, I also have a port.
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Thank you so much for replies Denny123 and Miriam !!
today was.... kadyla #10 for me.
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DL3:
The only way to know if is cancer is when you get Quimo therapy and the spots desapear, checking with the CT scans,
When I was first diagnosed I was chock and didn't believe that was true That I have cancer , until I got taxotere, and the spots that I was concern desapear....
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Thank you for reply Escorpion !
Ladies, wishing you a Beautiful weekend , Happy Easter.
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Thanyou !!! The same for you !!!
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